Use Cases

Children and Young People’s Health Partnership (CYPHP)

Tom Foley

Dr Ingrid Wolfe, Consultant in children's public health medicine and
Programme Director of Children and Young People’s Health Partnership (CYPHP)

Background to CYPHP

CYPHP’s
purpose is to improve children’s health through clinical practice, research, education
and training. We are a Partnership of local decision-makers promoting continued
health service and systemimprovement
through ongoing learning, evaluation and research. CYPHP’s current programme of
work has two main components:

·Implementation
ofa new model of care of
universal and targeted services to improve health and care for all children in
Lambeth and Southwark.

·Building an
informatics system that enables collection of health information to shape care,
and a research database that enables system intelligence and research.

Our
longer term ambition is to embed a children’s LHS into usual practice. This way
we aim to maximize health benefit for the local population; and through
demonstrating success, to influence ways of working more widely and therefore
to improve child health nationally.

The Children and Young People's Health Partnership is unique
in the UK and across Europe in its cross‐organisational, system‐wide,
transformative and academically rigorous approach to improving child health
services. The programme is designed to deliver significantly better health,
better healthcare outcomes, and better value for children and young people,
through:

·An evidence‐based clinically effective and cost
effective comprehensive day-to-day healthcare model for children and young
people that meets current and evolving health needs.

·A learning healthcare system so that continuous
improvement becomes part of everyday practice.

How you define a Learning Health System?

To us, a Learning Health System (LHS) is obvious. It
provides the missing link in translational research. It is the way that we
should have been working all along – using big data to its maximal advantage
for patient benefit. Using routinely collected health and healthcare data from
large numbers of children, through public health and administrative systems, and
analysing it to drive improvement - continuously. An ideal LHS enables improvement
at the individual patient level, and at the pathways and systems levels, and provides
the basis for research that is readily applied to local and global populations.

A LHS has an afferent (sensing) arm and an efferent
(feedback) arm, with analytical processes taking place in-between. There are
four main features of a LHS, which are described below, together with what
CYPHP is doing for each component:

1)Organisational decision-makers and stakeholders
coming together in a forum with a common purpose

a.CYPHP is a Partnership comprising local
children, young people, and families, Lambeth and Southwark Clinical
Commissioning Groups, Lambeth and Southwark GPs, King's College Hospital NHS
Foundation Trust, Guy's and St Thomas' NHS Foundation Trust, Evelina London
Children's Healthcare, South London and Maudsley NHS Foundation Trust, Lambeth
Council and Southwark Council, and King's College London.

2)Big datasets of routinely collected health and
healthcare data

a.We have built an informatics system that enables
evaluation of a new model of care, and is being extended and made sustainable through
linking with system wide healthcare provider and commissioner endeavours, and
informatics platforms for life course health research.

a.CYPHP’s model of care includes chronic care
pathways for children with long-term conditions who need care that is tailored
to their specific problems. Whole child care that is responsive to need is
enabled through a patient portal that facilitates a bio-psycho-social
assessment process, and uses the data to shape care accordingly.

4)Research in everyday clinical settings for
patient benefit and to further knowledge

a.A cluster randomised control clinical trial is
being conducted as part of the evaluation of the CYPHP model of care. In
addition to intervention research, observational studies are planned to take
maximal advantage of the infrastructure built for the evaluation.

What work your organisation is doing on Learning Health Systems?

Our definition of a LHS, and what we are doing in each
aspect, is described above. The process we undertook to establish CYPHP has put
many of the components of a LHS in place:

1.We assessed the need for and identified the gaps
in existing services.

2.We conducted an evidence review, to establish
what might fill those gaps.

3.We engaged a wide range of stakeholders.

4.We collaboratively constructed a model of care.

This process required extensive data gathering and data analysis
examining pathways of care that cross partner organisations. This has helped to
establish the basis of a LHS. The next phase is to:

The programme funding will end in 2020 and we hope to have
embedded the new model and way of working by then. There should then be a
continuous iteration of these steps, however, the real challenge is to pull
these components together and build momentum through leadership. This can best
be achieved through a clinical-academic partnership.

This work also requires system wide progress in three areas:

·A coherent approach to IG

·Data sharing agreements (that include secondary
uses)

·An architecture for using data

CYPHP have a dedicated team that, as well as clinicians and
managers, includes:

·A health services analyst

·Quantitative and qualitative researchers

·A database manager

There is a need for further expertise in data visualisation,
patient portals, and public health informatics. These skills are available, but
funding is a challenge.

There is an intention that this approach will be scalable to
other locations, but the focus is currently on building a cohesive team locally
and demonstrating utility to enable sustainability beyond current CYPHP funding.

What you see as the big opportunities?

The big opportunities for CYPHP will be realised through
building a sustainable local data sharing platform with robust IG agreements,
sustaining the partnership of decision makers, and making this approach
business as usual.

What other work are you aware of?

The Healthy New Towns initiatives, such as Ebbsfleet Garden
City, offer an opportunity to embed the LHS model from the ground up. There is
potential to embed the infrastructure to support new models of care and a LHS
from the foundation of a new town, for example, through automated data
collection embedded in the public realm. It is early days, but there are
encouraging signs of joint working, at the system level, between local Trusts
and CCGs.

What gaps need to be filled?

There is a real need to demonstrate the value of developing
LHS. Currently, it is not easy to articulate or to scale local initiatives. We
need to develop a powerful elevator pitch that is backed by robust evaluations
and use cases – of the LHS itself, and the benefits this approach to working
brings to the local population, patients, and the healthcare system. In
summary, we need to work at several levels:

-What does it all mean for the population
(quality of life, health, public health care interventions)?

-What does it all mean for patients (quality of
care, etc.)?

-What does it mean at the system level (cost,
flow, etc.)?

There is a need for more infomaticians and managers who can
collaborate to drive the LHS work. Without these skills and a mutual
understanding, LHS initiatives will fall by the wayside.

There is a need for support in developing new opportunities.
We see many opportunities to create collaborations, funding applications, etc.
but we have to pass on them because we are at capacity delivering business as
usual.